I tell our family story to anyone who will listen. I hope that our story will shift readers' embedded thoughts and ideas about what it means to be different and to care for a loved one over time. For me, the most gratifying aspect of writing a book is that parents write to me with their stories of caring.
Last week, I received such a message - this time from a father of a young boy with disabilities. I was so touched by his sparse, heartfelt and heartbroken prose. Ironically, I recently wrote a blog post questioning whether caregiving was 'women's work'. One friend, a longtime carer of her two adult sons with multiple disabilities wrote to me privately after that post, "I think women are nurturers and men are gatherers". Certainly, there are differences between the way individuals give and receive care. Perhaps the caring capacities of the sexes are not so easy to categorize.
Julie Drury is an online friend with a new blog and a compelling story to tell. I strongly identify with her modus operandi. This from Julie's blog:
I have been told that I am 'strong' and that I am 'brave' and that others could not do what I do. I am not sure that is true. I say I am not sure - because maybe I am different. I don't often cry when KK is in crisis, or when we receive bad news. I have always had a way of adding that information to my knowledge of KK's disease and moving forward. It doesn't immediately go to my heart and to my soul where I can be so seriously wounded that I might not have the ability to focus on what is important. KK. I worry that if I let the emotion overtake me I will miss something important. And now this from Ed, my online friend who is a Dad. Is there an in-between space that we can live - allowing ourselves to feel the natural woundedness without losing our steely, action imperative?
In His Shadow
Fathers and sons, the relationships can be complex. As a boy grows into man, a son will seek to find out what his place is in the world. He will try to define himself separately from his father. He seeks independence and a means to forge his own path. Few sons choose to live in the shadow of their father.
In my case, I find myself in the shadow of my own son – Rodrigo. Rodrigo is 4 years old. He is a sweet natured boy who has a developmental disability. He can walk. He likes to climb. He falls down a lot. He is full of smiles and energy. I talk to him but he does not talk to me. He does not understand what I am saying. I hope one day that he does but I don't know if he ever will. Rodrigo has been diagnosed with a developmental disability, epilepsy and cerebral palsy. Rodrigo's days are spent exploring a world that he does not completely understand. In his world, he perceives no danger. His curiosity guides him. I spend my days chasing after him making sure he does not get hurt. I am not only in his shadow. I have become his shadow.
Rodrigo loves to explore. When he enters a room, he will move around and seemingly reach, mouth, and touch everything. His curiosity seems unquenchable. He is cute. When he meets people, they invariably smile. They will say to hi to him. They will ask him for a hi-5. He will take no notice and want to climb up on to them. He loves everyone. I am there always to make sure he does not disturb them. It is at these times the shadow looms large.
Our home is Rodrigo proof. We have gates on all the stairs - both up and down. We have all the cupboards locked. When at home, the shadow Rodrigo casts is not so dark. At home, I watch him vigilantly and ensure he does not get into any trouble. However, when we go visiting to other people's homes, the shadow re-emerges. At parties, I find myself with my boy playing with children and making sure he is entertained and not hurting others. I spend very little time talking to other adults. His shadow is always there to grab, guide and lurch to ensure he causes no harm to himself or others.
I spend days chasing after my boy. My time is not my own. I have become the shadow of a 4 year old boy who in his own way is trying to understand his world. His world becomes my world. Because my time is not my own, I sometimes lose sight of who I am. I am getting lost in his shadow.
Rodrigo gives me lessons about time. He teaches me about the past. A past where I had the abundance of time but which I now realize may have been misspent. He teaches me about the future. A future where I will not exist and the needs of my boy will need to be looked after by someone else. He teaches me about the present and the importance of the now. He teaches me to take advantage of the moment and to doing things immediately when the opportunity is offered. He also teaches me to cherish my time with him. He is my boy and he offers my wife and I so much love and happiness. Our only hope is to keep him happy and for him to reach his full potential whatever that may be. We do what we can to keep him stimulated and engaged in his world.
I have read that to have a child with a disability also disables a family. The life that one thought they would lead disappears and it is changed forever. The unplanned life is much harder. Most things that were taken for granted such as going for a bike ride, going shopping, or even having a quiet dinner becomes bigger and more challenging. Most families with a disabled child will in one way or another struggle. Inevitability, you will make comparisons between your situation and another family's plight. You find yourself saying how lucky that family with a child with Down syndrome is because their child can communicate. At other times, you count your blessings because your child is not wheelchair bound and is generally happy and smiles unlike that family with the child with autism. Everything is relative.
However, having a child with a disability does put you in special place. Unlike many of life's tragedies or challenges, a disability in a child is on-going. A child with a disability will not only last a lifetime it will last beyond your own. Planning for a future where you are not around becomes very important early on.
I know to help my son I must ensure I help myself. To survive and endure and to make sure Rodrigo is always looked after. I need to regain control of my time. A friend of mine recently wrote to me that my wife and I do a terrific job in caring for our children but not to forget to take care of the adults who care for him. This is true. To do this, you need to look beyond yourself and your own immediate family. You need to ensure that time is dedicated to other members within the family. The burden of caring for a child with a significant disability must be shared with anyone that is willing to lend a hand. Pride has no place here. So we look to friends, to extended family, and the community at large to obtain help. We seek out this assistance to endure in the long run and to ultimately ensure that our son, Rodrigo, flourishes. Breaking down is not an option.
We find ways to cope and to survive. I am my son's shadow. However, I know for the benefit of my son and myself that in time I will have to step outside of his shadow and learn to cast my own again.